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    what's "normal"?

    Hi, been in a relapse since last week of Jan. Extreme tingling hands (both), tightness in both hands, forearms, biceps. It started out with tingling /numbness and over a couple weeks it evolved into tightness in fingers, palms, arms. The tightness is not bad but enough. Slight/ weakness coordination issues in right arm. I'm working still but its hard. I also began to have weird eyes and balance problems and it got so bad at one point. In March I was stabilizing but nothing was remitting just stabling and then in Mid March my right knee went numb and tightness in a part of my right quad.

    Also general numbness/ tingling in both legs, more on the right and tightness in my right waist. I also started to have some burning in my left toes. The balance issues came back. I thought I stabled from that. Nothing went away but I was making it. Then last week I feel worse, like everything just worsened. Started to get anxiety and depression. Balance got really bad and it seems my whole sensory integration is not in synch. Now it seems things settled down. Nothing remitted just the worsening settled.

    So my question is as far as flares go, A), what's happening? The flares I had in the past all remitted after 2-4 months and they were mild. No where near like this and it wasn't all these body parts effected at the same time and I never had imbalance like this. I believe the onset of MS was Nov,2010 when I was 43. Over the 4 years I had I guess about 5 or 6 flares but like I said they were mild. They didn't interfere with life although last year I did go through 4 months of spaced outness and dizzy /balance lingered but it was so mild and it was intermitted. So I like to know what's happening to me now? Is it just a bad attack that can still remit or at least improve or did I go into a progressive state? I know my late onset and age doesn't help the matter.

    Does the fact that it hasn't been that bad give me a better chance? And would steroids to end this or improve it be too late since it's been 4 months now.

    And lastly, does this sound like one big attack or did I have a few distinct attacks and before your over one, is it usual another one hits? I do realize this is long and complicated, even convoluted but this flare is driving me crazy.

    Also, sensory symptoms, is there a better prognosis with that?

    I know I need to be thankful that I can walk and I'm not in pain except for that thing that happens when you bend your head. I get vibration down my legs and that wasn't there in the beginning.

    I'd just like to get prospective on what's happening.

    #2
    Hello shel67 and welcome to MSWorld.

    You are not diagnosed with Multiple Sclerosis at this time.

    What you are experiencing is not normal and testing needs to be done to determine why you are having symptoms. There is no symptoms that are unique to Multiple Sclerosis as many other conditions have symptoms that are seen in MS.

    Right now there is no way to know if your attacks or relapses are due to having Multiple Sclerosis or due to something else.

    I'd just like to get prospective on what's happening.
    Only your Dr. and testing can answer that question.

    Best wishes.
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

    Comment


      #3
      Yeah. I know I need patiences but this is hard and before this everything would go away. I don't know what to expect.

      Comment


        #4
        Hi shel67,

        Originally posted by shel67 View Post
        I don't know what to expect.
        I know and understand Wait and see what testing indicates and go from there.

        If it's MS, not knowing what to expect is a normal feeling
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

        Comment


          #5
          Steroids are often used to treat MS flares, if recovery doesn't happen quickly enough on its own. They are also useful for other inflammatory diseases, so it might be worth asking your doc if they are a good option for you, even if you are still undiagnosed.
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
          .

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

          Comment


            #6
            That's really what I need to know about, steroids. Can they tell from the MRI if steroids would be helpful? As I understand it they will only help if you will heal buy they won't facilitate a healing if it's not going to happen.

            I wouldn't do the steroids unless I wasn't walking or seeing or if I were completely incontinence (is that the right word?) but I'm getting desperate to feel better. The imbalance and the weird head/ weird eyes is disabling.

            Can they tell if steroids can work? Is 4 month a long time for symptoms to remit or at least improve? Is 4 months too late? I know this has to do with inflammation. Can they see that on the MRI?

            Comment


              #7
              I have had steroids three months into a flare and they worked like a charm.

              You need to go to the docs and hope they put you in an MRI Tube and get a Brain, C-Spine and T-Spine Scan.

              Get the correct diagnosis, get treated for whatever is going on and go from there.

              Hope you are feeling right as rain soon.
              Katie
              "Yep, I have MS, and it does have Me!"
              "My MS is a Journey for One."
              Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

              Comment


                #8
                Originally posted by shel67 View Post
                ...

                Can they tell if steroids can work? Is 4 month a long time for symptoms to remit or at least improve? Is 4 months too late? I know this has to do with inflammation. Can they see that on the MRI?
                Four months is a long time for symptoms not to remit or improve. My guess is, that, without, steroids, after all that time, they might not remit on their own. No; I don't think they can see on MRI if steroids would help. They can see if there is current inflammation, and they can see lesions caused by past flares.

                I'm not a doctor or anything, but, after 13 years with MS, and many MS flares and steroid treatments, that would be my opinion. I'd really recommend looking into steroids. The side effects are horrible, but, in the end, my opinion is that it would be worth it to get rid of the symptoms you are still experiencing.

                I don't think 4 months is too late. When I first got MS, prior to dx, my PCP and my neurologist didn't do anything about steroids, and my symptoms not only did not improve, but got much worse. Finally, a doctor friend of my concerned husband chose to rx steroids for me, since my doctors weren't doing it, and that finally got me out of it. That was probably five months after the flare.
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                .

                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                Comment


                  #9
                  Originally posted by shel67 View Post
                  That's really what I need to know about, steroids. Can they tell from the MRI if steroids would be helpful? <snip> I know this has to do with inflammation. Can they see that on the MRI?
                  Hi Shel:

                  Whether inflammation can be seen on an MRI depends on whether the MRI was done with contrast. Areas of active inflammation absorb the contrast "dye" and show up differently on the MRI than do areas that are not active. That process is called "enhancement."

                  Lesions that enhance are actively inflamed, and doctors know that there are areas of active inflammation that might respond to steroids.

                  If your MRI was not done with contrast, then no, there's no way to tell from the MRI if steroids might help.

                  You can tell if you had an MRI with contrast if you were in the tube, then came out and had an injection of the dye and then went back into the tube for more imaging. If you didn't have an injection, then you didn't have an MRI with contrast and your doctor won't be able to tell which lesions, if any, are actively inflamed and which are not.

                  Originally posted by shel67 View Post
                  Can they tell if steroids can work? Is 4 month a long time for symptoms to remit or at least improve? Is 4 months too late?
                  Steroids usually work to some extent, but not always. Sometimes it's nearly miraculous and sometimes not at all. And it can't be predicted who will be helped and who won't.

                  The general guideline is that steroids help the most within the first 2 weeks of a relapse. After that, most doctors consider the damage to already be done and steroids won't help. A lot of doctors won't even prescribe steroids after the first 2 weeks.

                  However, sometimes relapses just hang on and hang on and refuse to get better. This is particularly true when steroids were never administered. In those cases -- and you might be one of them -- steroids done later can knock out long-term underlying inflammation and start the healing process.

                  So for a lot of people, 4 months would be too late. But considering that you weren't treated before and your symptoms are hanging on, steroids just might start some improvement no matter how late you get them. It's definitely worth asking your neurologist about.

                  Originally posted by shel67 View Post
                  As I understand it they will only help if you will heal buy they won't facilitate a healing if it's not going to happen.
                  Yes, that's right. In other words, steroids don't do any of the healing; they only calm down the inflammation so that healing can begin to take place on its own, to whatever degree that's going to happen. Steroids can help shorten the length of a relapse but they have no effect on the final outcome. In MS, the end result is the same whether the person is treated with steroids or not. It's just that with steroids, that end result can happen weeks sooner.

                  Comment


                    #10
                    Jreagan70,

                    That is the same information I was given. Steroids shorten the length of time of recovery but do not change the final outcome.

                    However, last fall I had a relapse but didn't go to my neuro because I didn't want to waste time and energy doing the MRI and steroids and it's been 9 months and I'm only slightly better. I will never know if steroids would have helped. When I finally went to my neuro and she saw how much worse I was, she said, "honey, when you feel bad call me. Don't wait for your appointment. We will fit you in" she said it with a sad tone in her voice like 'if we could have given you steroids we could have prevented this damage'.

                    So I really don't know. The common knowledge is that steroids won't change the outcome but her reaction was 'we could have prevented this damage'. From now on I will go even if it's a false alarm. Supposedly I am SPMS but my previous relapses remitted after 5 days of 1 gram of IVSM. That is 5 days of 1000 milligrams of intravenous steroids in the hospital.

                    I will do anything to prevent my MS from progressing. But, shel67, you are not even diagnosed yet. I wonder if you are living in an area where there isn't sufficient medical care. I say this because I was living in one of the largest metropolises in the country and I moved to a state that has semi-rural medical care. I moved to a new city('that had the best medical care in the whole state' according to everyone) and went to the doctors before I moved there. They all assured me that I would get the same care that I got at home.

                    Well, I got a rude awakening at the kind of care a large quantity of people in the US endure. So far I have had umpteen appointments and have only seen ONE doctor. The Nurse Practitioners handle everything. They are a lot more friendly than the doctors but they are not a substitute for someone who has gone through the rigors of medical school.

                    Then, when I told one nurse I wasn't happy with the way they were doing things, I was told, the other doctor in this town will do it the same way. There is no competition.

                    In a big city, if a patient isn't happy with the care they are receiving, they will go to another doctor and the doctors know that so they have to give the patients what they want and need. If they don't know something they will research it. This nurse (when I was seeing a doctor in my previous home) had all these rules to make the patients follow. Rules that I know are not necessary. Doctors are EDUCATED to use judgement. Nurses and PAs are TRAINED to follow guidelines and they don't divert from their guidelines.

                    Luckily, I'm going back home in a few months. Sorry this is so long. I got on my soapbox.

                    Comment


                      #11
                      Originally posted by KatieAgain View Post
                      I have had steroids three months into a flare and they worked like a charm.

                      You need to go to the docs and hope they put you in an MRI Tube and get a Brain, C-Spine and T-Spine Scan.

                      Get the correct diagnosis, get treated for whatever is going on and go from there.

                      Hope you are feeling right as rain soon.
                      I did, yesterday. I had contrast and with out. I had the EP eye test too. I know they did brain and spine. I don't know what kind of spine C or T but I was in there forever.

                      Comment


                        #12
                        Originally posted by Mamabug View Post
                        Four months is a long time for symptoms not to remit or improve. My guess is, that, without, steroids, after all that time, they might not remit on their own. No; I don't think they can see on MRI if steroids would help. They can see if there is current inflammation, and they can see lesions caused by past flares.

                        I'm not a doctor or anything, but, after 13 years with MS, and many MS flares and steroid treatments, that would be my opinion. I'd really recommend looking into steroids. The side effects are horrible, but, in the end, my opinion is that it would be worth it to get rid of the symptoms you are still experiencing.

                        I don't think 4 months is too late. When I first got MS, prior to dx, my PCP and my neurologist didn't do anything about steroids, and my symptoms not only did not improve, but got much worse. Finally, a doctor friend of my concerned husband chose to rx steroids for me, since my doctors weren't doing it, and that finally got me out of it. That was probably five months after the flare.
                        you know, all of my flares (if that's what they were) took 2-4 months to go away but they were not disabling and not this wide spread. Symptoms have been added on this from when it began but the first symptom which is the hands and fingers have stayed.

                        I know I had another attack 2 months in that effected my right knee and leg. so that's 2 months old. I believe I had something happened last week that made it all worse but I think that was pseudo from menstrual cycle. If I don't get some improvement I don't know how I'm going to live this way.

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